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Old 07-21-2006, 11:49 PM   #16
Cheshire Figment
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I would suggest you carefully read my comment #7 above!

So you start off in the morning and then get into pain. Earlier each day and you feel miserable. Don't worry about what others may say or even how they may look at you, you will never see them again. It is you and the people you travel with that is most important to you.
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Old 07-23-2006, 10:18 PM   #17
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I am going to have to rent an ECV myself just to help with all the walking, I have a bad ankle that seems to trip me up and make me stumble just walking thru the house, work, or a store, and also a knee that is losing it's cartilage and will need to be replaced and gives me alot of pain. Last December, on a trip to WDW I had rented a ECV for both my mom and dad, and one day dad felt terrible and decided not to go to the park, what a relief it was to not have to walk on my knee and ankle all day. This up coming trip to help me with all the pain I will go thru, I will rent an ECV just to help me get around, have decided that I can stand in the line, just need help with the walking part.
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Old 07-23-2006, 10:46 PM   #18
bairdbeth
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Rent an ECV. A couple of years ago I re-injured my back just before our trip to WDW. My doctor said I could only go if I got a wheelchair or ECV. My DD was only 7 or 8 so I rented an ECV. I am very pooh sized and knew I would get stares. It really worried me, but I came to this forum and was reassured all would be well. I did get looks and comments as I parked and walked into rides, but I soon didn't care. I did not suffer from the extreme back pain that walking long distances caused. We went at a slow pace and my DD says that trip is one of her favorite trips. It was a hard decision, but I am so glad I made the right one. Get the ECV and forget what others think or say. It is their problem. Enjoy your trip!
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Old 07-24-2006, 02:10 PM   #19
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Don't feel bad!!! No one in their right mind would pay what we have to pay for an ECV at Disney World if they absolutely didn't need it. If I could walk, I would! I used one two years ago on our first family trip to Disney with my DS age 17 and DD age 5. I have severe osteoarthritis of both knees and am overweight. I have walked bunches in my day(used to live in NYC). But now, until I am able to have surgery, I can't stand for more than about 5 minutes because of the pain. An ECV was a godsend. I was able to enjoy our trip and had no problems with anything. Cast members were always very helpful and I don't remember anyone staring any more than the fact that people just sometimes stare. Don't worry. Use your ECV and enjoy your trip. You have a right to be able to have the freedom the ECV provides.
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Old 08-02-2006, 01:52 AM   #20
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Oh my goodness, I came to the disAbilities board to post about the exact same topic. Last summer my boys and I spent several days at Disneyland. By the the second day I was in pain, but just kept going. By the third day I woke up with severe ankle pain and swelling. I was miserable and finally gave in and rented an ECV. Yes I did get stares once in a while and it made me uncomfortable and self conscious, but there was no way I was going to endure that pain.

I have arthritis in several joints but have pain only every once in a while. The ankle incident was the first time I experienced that much of a problem. I basically wrote it off as maybe having twisted my ankle somehow. Talk about denial. Well, this past February, I was on my feet all day in the kitchen on Super Bowl Sunday since I was hosting a small party at my home. By the end of the evening when I finally got a chance to sit down and rest a while, I couldn't get up due to severe pain and swelling in my ankle. The following morning I couldn't walk for a couple of days thereafter. Now I notice when I walk more than a couple of hours, I begin to have that familiar feeling again.

Next summer we have a 10 day trip booked for WDW. I want to enjoy the parks with my boys and sister, but I'm having a hard time accepting the fact that I'll need to use an ECV. I can really relate to the OP. My plan is to increase my physical activity as much as I can tolerate by beginning a walking program as approved by my MD. I'm not obese but do have some pounds to lose, so maybe that'll help a little although my doctor doesn't think it'll make much of a difference and that as time goes by, my condition will only get worse. I feel like a big cry baby when I realize that some folks out there have much bigger challenges.
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Old 08-02-2006, 07:45 AM   #21
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Question

I too am relatively young, have RA and lupus, and on a normal day do not use a wheel chair. We have never gone to disney because I am afraid of not being able to walk. On other vacations after the first day I am relegated to our hotel room in pain and fatigue. I swore I would not get an ecv because I did not want my kids to remember that for their first trip. But this week, a month before our trip, my health has flared.

I have two questions. When you rent, can you use a regular hotel room? Can you use regular transportation like the monorail?

Timid and not sure I can do this.... But if I dont we may have to cancel the trip. I guess that would be worse.
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Old 08-02-2006, 09:13 AM   #22
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You can use a regular room with an ECV.
Yes you can use the Monorail they have wheelchair cars that have more room for a wheelchair or ECV. The busses are easy to use also they will load you first and you will be unloaded last.
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Old 08-02-2006, 03:35 PM   #23
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Quote:
Originally Posted by Esmk
I too am relatively young, have RA and lupus, and on a normal day do not use a wheel chair. We have never gone to disney because I am afraid of not being able to walk. On other vacations after the first day I am relegated to our hotel room in pain and fatigue. I swore I would not get an ecv because I did not want my kids to remember that for their first trip. But this week, a month before our trip, my health has flared.

I have two questions. When you rent, can you use a regular hotel room? Can you use regular transportation like the monorail?

Timid and not sure I can do this.... But if I dont we may have to cancel the trip. I guess that would be worse.
You can do this. I know how you feel because I'm similar thoughts, but at some point we have to come to terms with these health issues and deal with them the best way we can. And you're correct, it would be much more disapointing for your children if you cancelled the trip. My first experience with the ECV last summer made me realize that I was causing more worry burden for my kids by not accepting my limitations. Keep reading these boards, it'll make the process easier for you. We can learn a lot from others that post here.
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Old 08-02-2006, 06:39 PM   #24
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Reading this post from begining to end has made such a difference in my outlook to this trip! Two days ago, disappointed by health, I think I was ready to cancel. Now to begin looking into how/where to rent ecv's.
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Old 08-02-2006, 08:53 PM   #25
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My DH has MS and we rented an ECV last trip. For this one we bought an inexpensive one for him outright, since we can now use it for any vacation we take, even day trips. He's got a great outlook on it, when people give him "that look", which he gets a lot because he looks like an extremely healthy guy until he stands up. He just stares back at them and asks "What's the matter? Jealous?" with a huge grin on his face.

don't worry about what people think or the looks they give you. DH is right, by 3 PM most of them are probably going to be thinking not an inconsiderate "look at her, too lazy to walk", they're going to be thinking "what I wouldn't give to have one of those right now!"
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Old 08-03-2006, 10:22 PM   #26
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I had to start using a wheelchair or ECV in my mid 20's because of reconstructive surgery on both feet. I'm used to getting those looks. Sunglasses are your friend. That and just not looking at those people. When it has gotten to me I've just wrapped my ankle. It didn't help me, but it gave them a reason their narrow minds could accept, and I fielded substantially fewer glares and could better enjoy myself.

I'm really oblivious to it now. Last week when we were at the parks I told my dh that people seemed less judgemental and nicer. He hadn't noticed any change and had seen plenty of dirty looks cast my way. The difference is I choose not to see those people. They can stare at me all they want, but I don't even notice, because they don't exist in MY Disney World. If someone glares, but no one looks, they've only succeeded in hastening their wrinkles.
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Old 08-03-2006, 11:29 PM   #27
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RA here, too. But I'm still stuck in the "I'll never use a chair" mode of thinking. We went to WDW in July. Each day - I made sure I used the pool mid-afternoon. It worked for me - really cut down on joint pain. Yes - sometimes I did hurt, but why complain?
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Old 08-03-2006, 11:39 PM   #28
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I will tell you your trip will be better using a ECV. You will be in less pain so you will be happier. You will have a basket and everyone will want you to carry their stuff
I use mine to go on day trips at home, the zoo, the park, Etc
I always end up carring water bottles and snacks, Everyone loves my ECV, Especially me!
Just smile and no one will say a word..
I have fibro, CFS and cronic pain.
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Old 08-03-2006, 11:41 PM   #29
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My DB (who just turned 39) has been told to use his cane all the time (he had a very bad hip injury). He is adjusting to the fact that someday he will not be able to walk. I also have some mobility issues.

I hope you enjoy your EVC at WDW. We met some friends 2 years ago from the UK. It was the first time the guy had an EVC. I don't know what made him happier...WDW or the freedom to go where, when and how he wanted. Thank goodness he got NHS in the UK to buy one for him when he got home.

To me...for a person with limited mobility ECV=Freedom! And don't worry about what other people are saying....I mean..it's not like your the size a whale and wearing Spandex

PS...plus...you can volunteer to carry all the "junk" people seem to need to have at WDW!
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Old 08-04-2006, 06:54 AM   #30
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Quote:
Originally Posted by Esmk
II swore I would not get an ecv because I did not want my kids to remember that for their first trip. But this week, a month before our trip, my health has flared.
I've got a question for you to think about.
Would you rather have your kids remember a first trip with a parent who was using an ECV and was able to do things and be fun or remember seeing their parent in pain?

Maybe you would do the same things anyway, but the end result with the ECV would be doing them in comfort. Walking around in pain is just going to create more pain. My kids are older, but some of their early memories of WDW include watching their grandpa hobble around the parks, icing his knees after a day in the parks and sitting on a bench in a central place and not be able to enjoy the park with them. The last few trips before he died include memories of him using an ECV and really being included in the fun.

My youngest DD can't walk at all and her first wheelchair was a freedom machine for her. I know some other parents of kids like her felt like the wheelchair was a depressing thing for them. It never was for us. We looked at it the same way as glasses - a way to do things that she would not otherwise be able to do. I might have a different perspective because without glasses, I can see clearly only about 5 inches away from my face (I even put my glasses on at night to get up in the dark). But, at least to me, ECVs and wheelchairs are glasses for the body.
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